Living with dementia at any time presents everyday challenges for that person and those around them, but coronavirus is making daily life harder for people with dementia.
Throughout the coronavirus pandemic not being able to leave home, the temporary shutdown of support groups, and family members being unable to visit loved ones in care homes has led to a wealth of concerns for people living with dementia.
George was diagnosed with mixed dementia six years ago and co-chairs the Dementia UK’s Lived Experience Advisory Panel, he explains: “In the last five to six years I have been doing a lot of travelling around the country, giving talks, attending meetings, basically being an activist to try and improve the support for people living with dementia.
“I have bad days here and there where I just get confused, I get what we call dementia fog.”
For George, lockdown has provided the opportunity to slow down and take a break, but it has also left him feeling cut off from other people.
“It’s actually been a welcome, refreshing experience,” explains George. “Having said that, I do feel isolated.
“There are plenty of people around the country who have found it more difficult and who have found it very isolating.”
Many dementia services have been restricted or reduced during COVID-19, this has led to an increase in calls to Dementia UK’s Admiral Nurse Dementia Helpline which provides support and advice for people living with dementia and their loved ones.
“It could be people enquiring about anything from a little thing like not knowing about Admiral Nurses, or what the services are in their area, to much more complex emotional, psychological, or physical symptom control issues,” explains Dr Sarah Russell, a professional and practice development facilitator at Dementia UK.
“I think because [the Dementia UK helpline] is manned by Admiral Nurses, what that means is that while they’re having that conversation, they are assessing and thinking what can we do next to help the caller.”
Sarah’s main concerns surround people being unable to leave the home and how this will affect both physical and mental health.
“Physical exercise is a really good way to distract and divert people and keep them occupied; by staying confined to the house, we’re actually putting people and their families at risk,” emphasises Sarah.
“It’s causing people harm by not being able to have their usual physical activity as well as that interaction with the world around them.”
“To enable the emotional, mental and physical well-being of a person living with dementia has been really tricky in our society anyway, but I think COVID-19 has highlighted that further,” she adds.
The pandemic has seen day centres and memory clinics stop as the government tries to balance the public health agenda with the potential negative effects of social isolation and physical distancing.
A dramatic decline in some people’s conditions has highlighted the need for a more consistent support system throughout the country. This includes an increased number of Admiral Nurses: Currently there are less than 300 Admiral Nurses across the UK.
“I don’t need a great deal of support, but it would be nice to have some available on the occasions when I do feel it,” admits George. “Everybody is different, but we all need a standard system of support.
“That standard model of care should include dementia navigators for everybody, when and where you need them, and a consistent provision of Admiral Nurses everywhere.”
Throughout lockdown, concerns have arisen around the increased physical and emotional deterioration of people with dementia living in care homes. This has, in part, been due to family members being unable to visit.
“People with dementia are already at risk of dying from COVID-19 and if you’re not having your normal interaction with others, your cognitive and physical function can decline further,” reveals Sarah.
Family visitors are essential to preventing this decline, she says: “Family members are not just social visitors, they are an essential part of care.”
“They bring particular nuances and understanding of people living with dementia, their everyday routines and their everyday behaviours. They bring intimate knowledge of what somebody is like, what they’re like when things are going wrong and what makes them happier as well.”
Balancing the importance of public health with the well-being of dementia patients has been one of the biggest challenges in care homes during the pandemic. This has led to an explosion of people using technology like video calls to help families stay connected.
“One of the things that’s been going through my mind is: What do we need to return to doing, which was stopped during COVID-19? What do we need to carry on doing, that we were doing during COVID-19? And what do we need to do differently after COVID-19?” asks Sarah. “One of the things is to carry on harnessing technology.”
For both Sarah and George, the increased use of technology has been a silver lining to the coronavirus pandemic and lockdown, with George able to connect with people and develop stronger friendships via weekly video meetings with his network.
Along with keeping friends and family in touch, technology has meant that assessments and consultations have advanced in some areas.
“With technology you can coordinate talking to health and social care colleagues to see what do we need to do for different people and how we can help them,” explains Sarah. “We can talk on the phone or via a video consultation, so that we can harness our collective brain power if you like.”
It is hoped that the positive use of technology will continue after the pandemic, but digital exclusion should also be considered; not everyone can or likes to use technology. The challenges that come with living with dementia have been brought to light, but it is evident more still needs to happen to ensure people are supported.